Saturday, April 13, 2013

Reagan dozed off on the sofa last night laying with her Daddy, but then woke up again an hour or so later when Daddy failed to lay her in bed. I gave her clonidine and then he laid down in bed with her where she proceeded to go crazy! The clonidine had the opposite effect on her! Instead of calming her down and putting her to sleep, it made her completely erratic, kicking and flailing all of the place. You could tell she was tired, her eyes were closed most of the time, but she just couldn't hold still. And she did NOT want to be restrained! Finally I gave her a dose of Lortab and then 30min or so later she calmed down and fell asleep. She actually slept straight through until this morning when her brother woke up at 6am and then in turn woke the entire house. I tried to get him back to sleep but he was not having it (and he's been off schedule all day because of it)! Ryan has been difficult all day, while Reagan has been completely wonderful! Totally laid back and calm, but still having lots of chorea (kicking her legs a lot). I also think her reflux is acting up because she's been hiccupy and making these weird gasping noises here and there throughout the day. Other than that, she's been great. So sweet. And snuggly. Definitely wouldn't have guessed that based on how she was last night!! I'm not sure whether I should try the clonidine tonight or not. It's weird how it can affect her so differently on any given night! She had a similar reaction to it last Tuesday night. I don't really know the mechanism of the drug, but since it's a blood pressure medication (and not some sort of neurologic drug) I wouldn't expect that sort of reaction. Hopefully she'll doze off on her own and I won't have to give it to her at all!

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About Me

On August 21, 2007 (at exactly 5 months old), Reagan had her first cluster of seizures. She was diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease. Life has been a roller coaster for us and our baby girl but we've been blessed with wonderful friends and family to help us though this!